MeetAnOstoMate
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Jayne
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About
HelloIN brief I have one main ambition which remains unfullfilled - to obtain my Private Pilots License before my 70th Birthday.
..... So, if anybody is a Pilot - and an active one - I would love to hear from them.
I figure the maths may still prove to bit of a challenge for me - but the rest is fine ....
Its rather like one's first solo drive on land - it is very different from driving with someone else in the car besides one ....
Same, I believe, as regards one's wings .... but time is by definition closing .... [high insurance after the magic 70] .... so the 'do-it-now' has a pressing engagement!
Professor Jayne gave the Brooks lecture this Year - 29th April 2023 - here in UK - and I believe touched upon the TIES implant device - from his perspective; Prof Jayne tells me that his presentation was slide based and there is to be an article at some point - but was unable to share a transcript of his Presntation. Sadly I was unable to be present in Kenilworth for the event - for I would have liked to congratulate the Team!
For anybody who does not know - Professor David Jayne implanted the first UK recipient [Me] of the 3D printed titanium matrix with the machined titanium Collar version of the TIES device - in May 2019, and three Others in 2019 the fourth to be implanted in 2019 was a Male Patient in Sep 2019.
Waves from the UK West Wales Coast of Pembrokeshire and the hills of the Mid Welsh-English Borderland.
I look forward to hearing from you - I believe that paid Members may send a message - Others only able to interact within the forum/chat.
Thank You for visiting - particularly as I have not uploaded a Profile Photograph of myself as yet!
Maybe this will follow - Meanwhile I have put up a pick of 'Poppy' my Mk I little red soft-top .... cheap fun wind-in-the-hair motoring - great for fine weather and a coastal bolt hole! My former Pets who whilst still 'with me' in spirit now reside on a midwelsh hillside where they rest ineach others company ... no doubt up to michief and service in their next incarnatiopns! ... BUT I am LOOkIng FOR FOURPENCE AND FIVEPENCE AS i HAVE BEEN WITHOUT k9 COMPANIONS FOR TOO LONG!
Seriously, I am not just about cars and planes and am in fact a varied and versatile Beanie .... so, if you have a few moments I have jotted down a bit about me and my life so far as its relevance to this site : By doing so, I hope in a small way I may bring a little help, inspiration and comfort to Others, who like me, find themselves facing challenges - I do hope so.
If you are 'Searching' - never give up and be the person who is kind to yourself and knows how to find and balance self - You then may become loveable by others and will have an 'overflow' to give of Yourself.
Best Wishes from UK.
My General Profile:
Hello,
Thanks for looking - I WISH YOU A LOVELY DAY
2023 Personal TIES Update:
Aug 30 2023 saw 9 months post Reparative Surgery to address the damagae that my body endured as a result of hosting the TIES device.
I HAVE RECENTLY ASCERTAININED THAT I REQUIRE FURTHER SURGICAL ADDRESS SO CURRENTLY I AM MAKING THE MOST OF THE EARLY AUTUMN and am enjoying OPenArt Studios and open top motoring whilst the good 'Indian Summer' holds before rain and wind blows one to seek shelter!
My last and most recent elective surgical repair surgery was undertaken privately by a very well respected team here in the UK - funded by Ostomycure Group Insurance when I resorted to Legal Representation in order to ensure access to the RESPONSIBLE CARE that I needed.
For those who are researching TIES - PLEASE PLEASE ask many many questions AND BE INSISTANT ON FULL INFORMATION ABOUT UPTODATE ACTUALITY OF PATIENTS PROGRESS. REMEMBER. DATA DOES NOT HAVE TO BREACH PATIENT CONFIDENTIALITY TO BE OPEN AND TRANSPARENT!
My own contribution of Nov 1 2022 may be found as part of the discussion on this site at
https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=14210
AND, if this is nolonger available I will update in due course.
Transparency of Information:
In due course timeline photographs of the experience will be published to ensure that no patient with a base diaganosis of Chrones Disease will undergo the experience I had as a result of hosting the TIES device.
Postive Responsible Innovation:
It should be noted however, that I AM A PROPONENT OF RESPONSIBLE AND SAFE MED-TECH INNOVATION and wish all those involved with such research and developemnt the best possible outcomes - For without some MEASURED AND INFORMED RISK there can be no innovation!
In May 2019 I was the first UK receipient of the novel TIES implant device to replace the adherance of stick on ostomy pouch for illesotomy management. I was accepted onto the clinical trial - having secured my own funding from the Powys Health Board [a Welsh NHS Trust within the UK National Health provision] who funded this [me as a memeber of the Patient Body] research - AND, despite the fact of me having a base diagnosis of Chrones Disease I was implanted by Prof Jayne in Leeds, UK AND I was explanted in Leeds on 04 September 2019.
A LITTLE BIT ABOUT ME AND LIFESTYLE CHOICES:
I am focussed on having a little fun in 2023 before the summer/autumn is over - and back in 2022 committed to a classic soft-top sports car .... So - as I spend my time between the Mid Wales hills and Pembrokeshire Coast - with many journies around the UK - maybe I might see some of you around .... so if you see a traditional red little Mk 1 Eunos Roadster - [visually like a Mazada MX5 convertible but with the Eunos badge] - "poop-poop-poop" me three times!
GENERAL INFO about Me:
Friends with a positive outlook are fun and enriching - so I try to be likewise ... no matter how challenging our high input focus can be ..... I am still renovating property and trying to remain practical and focussed!
Work and Play ... fun and focus ... and then some!
I would still like to connect with others who have had a TIES implant - especially with Pete .... for it would be good to see some real positive outcomes from the developement of this device!
It is over four years since I was the First Person to be implanted with the TIES novel device under clinical trial to offer a no bag illeostomy management.
I am wishing to be in contact with my fellow 2019 implantees Three to my knowledge within the UK [up to 4 Sep 2019] - and some 8 who had an earlier device, five implanted in Sweden [one of which a replant] and one in France and one in Czech Republic.... All of whom I believe nolonger use ing TIES as a functional 'continent' system, all of one having been explanted after a short retention of the device.
What will, I hope in the future, give me great pleasure - will be to hear from those individuals who DO go on to benefit sucessfully using TIES [or some other device] as a continued life continent solution - without the need for stick on appliances to manage their ostomies.
Please network and get in touch - Thank You so much... ANd if you know of another TIES implantee please flag - please share - for I only wish ALL the very best going forward!
The archive article covering my own implantation is covered by inclusion of an extract from press releases circulated at the time [May 2019] on the TIES [ostomycure,com] lifestyle marketing website - I am relieved that the Sponsor Company has removed the words "without complications" from the press article!
I have not yet written about my experience up to explant in Sep 2019 and the time that followed whilst 39 months elapsed awaiting repair surgery!
For it is my intention to publish timeline photographs for acurate pictorial information as part of a BALANCED AND POSITIVE RESOURCE.
What I will share, as a positive statement, is the fact that there is one particular experience during my brief hosting of the TIES device within my body, and it is this:
I will always remember the first time of showering, with my TIES lid in place - and the really special feeling of Freedom I experienced at having the shower fall freely onto my body without either a wet bag against me or even a smaller appliance following intimacy - it was simply a super experience of FREEDOM for the first time in forty or so years of having an appended bag .... [so too, but unlike, the occassions of output on a non enclosed stoma] - I was like a new baby experiencing a new dawn after the 'wet bag experience' which had become my norm for many years! Then, as quickly as that new found short lived period of freedom been experienced - came the adbdominal distruction that began - I am afterall a Chrohns Disease - base diagnosis - Patient, and although having had no active Chrones Disease for many years, our geneology is the determining factor - AND NOW THE SPONSOR SITE STATES THAT THE TIES DEVICE IS UNSUITABLE FOR CHRONES DISEASE PATIENTS. A responsible statement on the website - NOT before time! Heed this well.
If there is one thing that my own misfortune has achieved, it is the contribution towards the Safety of the patient base who follow me - for I would not wish any one person to experience what I did when hosting the device. SO if you are a Chrones Disease Patient think very very carefully and approach discussions with your lead Clinician fully open-eyed - and ASK ALL THE QUESTIONS!
Moving on .... {And there have been real difficultuies in so doing!} ......
Generally, I do not use social media.
I surfed in here when I was looking up hernia / stoma.
As far as the specifics of folk joining here - I suspect I may have the opportunity to be updated with medical and social information particular to our circumstances.
I have written some stuff following: But in brief I have joined in order to share and help others. That is my intention.
I must also say that I will not wallow in negativity and will only try and support others by contributing positively where able to do so.
I note there is no spell-checker facility - or I have missed it - so appols for any such - not my strongest point ;-)
I have been most fortuneate with my medics and surgeons over the years - without whom I would not be alive: However, we are all responsible for our own well-being and whilst the medical professional can be wonderful - they can not, nor should ever be expected to be the salvation for our own individual journey on the planet!
I would always say to anyone 'searching' "Believe in Yourself" "Have the confidence to go deep within and then some - and even if one is a person who likes to be in control, be brave and let go - find your ultimate weakness - be with it, get to know it and from here you can help, yourself, and others."
Be strong, but be gentle and kind - the rest will follow.
I have had my ileostomy since I was 25, ie over 44 years.
I accept it as being part of me - and like most of us, just occassionally get tired of its management and think it would be so nice to be without it!
I have also kept my eye on cutting edge research - both medical per my own conditions and also in a wider vein.
I am not a vain person but do find that a stoma (and its workings) impinges on the reality of my body - I am in fact a spiritual person and so it just 'is': But it would be lovely to find others in a similar vane. I do not currently have any Ostomist Friends - but then I do not like such definitions either!
I also had a tough and quite a long physical illness prior to having the collectomy. Largely as a result of high prolonged stress in isolation as a younger, sensitive, but very independent person. I spent many years on metabolic units and in varying stages of energy and fitness - always working my way to wellness and never giving in - always holding the ideal and never settling for second best.
I have a chimp to thank for my survival - back in the 70's - having devoted its life to medical research: I must do something very particular to say thank you to our fellow primates.
I have had several close calls and like a cat of nine lives - I have a couple or so left .... and then some!
From being a healthy club tennis player and high energy competitive person I went to someone who could crawl on all fours and barely make a cup of tea for herself: At the age of 17 I was given a prognosis of six months unless a colectomy was done there and then - I had a Chrones diagnosis and this was in fact Penetrating Chrones which affected pretty well all my alimentary tract and also came out on my legs. There followed a series of physicians and second third and fourth opinions along with energy medicine to treat in tandom the dis-ease I was fostering. After further 3 month prognosises, One went into deep line feeding - in order to rest what had become an infected and vulnerable mass of intestines - not a temporary ostomy - but a period of resting the diseased tract with the result of healing from the top down - at the expense finally of the rectum and the large bowl: But rather than having all the tract removed and ending up with a feed pipe which was being promoted as the option fast becoming my only reality - and never tasting food again - one managed to become healed and learned to manage one's journey: Sadly 24 hours prior to my schedulled collectomy surgery when I was strong enough to be operated upon, my large bowel perforated and I went into toxic shock * : This resulted in 'gut bugs' travelling thoughout my body and infecting all my major joints - so there followed not only the trauma of major abdominal surgery on a weakened body - but also infected joints and fissures with severe mobility issues and many years of learning to overcome such stuff with packing fissures to the bone and addressing open wounds to allow draining off of infected fluids - But, on the positive side, also providing natural physical drains too.
*Prior to spiritually processing events I used to wake up with night mares reliving the point of being wrapped up in silver paper and being rushed to theatre before passing out with anaethetists and the team in theaatre. I am still able to access certain moments within theatre when I was looking on outside of my body!
There is much that can be said about the esoteric side of life here too - but this site is not the place to voice these: Just know there is much more going on than just the physical manifestation of our conditions.
Our mental state of health is a cruitial element to the management or otherwise of our challenges in the varied form they present.
I often wonder - whether, had I not delayed for as long as I did, would the outcome have been different - There is no telling for sure - as there is never the opportunity for a 'control' option - but what I will say, is that it is different for every individual - and one has to take calculated odds and spiritual intuition to go for what is right for you: There is little doubt in my mind, that had I not delayed and worked towards a healing rather than cut immediately where high infection was prevalent - then the life would have been shorter and much less fulfilling - notwithstanding the challenges one has inevitably not only risen to but learned from. In one's quiter moments we know we are richer for our experience - tough as it is: And generally most of us are glad that we do not suffer from some 'other' condition we have witnessed in Others. Dis-ease seems to be visted upon those whom not only can bear it, but also often can be the richer for their experiences.
So keep on trucking - and remember to celebrate the triumphs - no matter how small - and really blow-out on the big ones: For your life is what you make it - for yourself and those around you - whether close or professionally supportive - all benefit from positive, reflective and a genuine sincere feed back. The more informative you can be - for you can know your body best - You are the best at being You - the better others may be able to respond, offer options, try alternatives and in my experience, the more supportive and progressive one's 'treatment' can be.
I know I have banged on some - so forgive the verbosity: I have keyed it in the belief that someone somewhere may feel a comfort from, even a resonance with some elements - I know, had I not been forced to deal with stuff on a lone basis at an early age in mylife - Some of my trauma may have been greatly reduced: You do not have to wear your heart on your sleeve in order to benefit from and contribute to some fellow humanity and caring for the greater good of our fellow folk - as I say eleswhere here, I am intrinsically quite a shy person. Certainly, in many ways, a lone person - not lonely - just lone.
Nowadays I am a pretty fit person - having just beaten a blood cancer senario in 2013 which had its challenges - some of which are ongoing.
I have been active in business, fullfilled in life, and have much to share - So if I can help anyone who is 'going through the mill' I am pleased to be able to lend a virtual hand: Life can offer amazing opportunities in unlooked for places - one just has to be open and aware to recognise these and not be fearful of trying and responding with positivity.
I am interested in befriending musicians who are switched on and have postive energies and a high level of emotional intellegence. If they have ostomies - then fine - if not - also fine. It is much easier to view the stoma and bag that I wear as a means for life - without which I would not be profiling on the keypad.
If one relates with folk either intimately or closely at a soul level one's stoma does not become an issue.
My own comment to newcomers who are coming to terms with their stoma and what this entails for their lifestyle, is be open and frank - folk who are authentic will act accordingly and it is true, that some need educating and some just can not hack any artificial bits on their or your body - it can be the same for anything that is visible for some people - they just feel uneasy - and it does not change with experience.
I am in a long term relationship and enjoy a great deal of love and protection from my Partner of over 35 years standing, and I feel he knows me better than I do myself at times! My Partner is not an ostomist: But accepts me for what I am - a close special Friend.
I have also been fortuneate to have a very special Spiritual encouter with a gifted Surgeon who has a great capacity for love at the Soul Core of our BEing - in whom I have found solace albeit a deepness of sadness too but an Unconditional Love that hitherto I had not known - and I have been very humbled and very grateful to have been permitted the opportunity of walking a shared Path for a time whereby much Spiritual support has become manafest at times when most needed.
I have sucessfully co run a professional service business and also done my bit to aid the floatation of a mortage company through a chain of estate agents when I was younger - Most of my professional work having been in the field of architecture, property and design - I would now like to find a new gentle energy project with which to become involved.
I am Mid-Wales based on the border of Shropshire Herefordshire and Powys, Mid Wales, UK and also on the Pembrokshire Coast.
Nowadays I am quite a shy person, although a strong one: I find 'networking' for the sake of remaining connected a chore - but where there is a nieche or need and where like minded folk may 'BE' then I am at ease.
If you feel there is a resonance here then feel to share a few words.
Years ago I married my Best Friend - who was a Master Mariner and I have been fortunate to live a varied well travelled life with much opportunity and wide range of expereience - sailing with my husband at times and at times living an independent life.
Later I found my Soul Mate and pretty much worked and lived 24/7 focussed on dveloping an architectural presentation company. Later moving to Country living and coastal living following a more relaxed lifestyle.
I am an explorer at heart - be that over land in the air or upon water.
I love nature and adventure and my fellow Earth Sky and Water creatures - Humans are by no means the beallandend all of existance!
I also have a spiritual life.
I like live music: particularly 12 bar blues, medieval, some jazz and some classical: I find opera a challenge and ballet I have not yet learned to fully appreciate - Rap can be amazingly good - but generally I am not keen, and traditional folk I like in moderation: Many other styles are wonderful in their own right: I have a friend who makes Native American flutes for example. There are many keys our Soul acess - I am not a musician myself, but do have drums and rattles. And, although I can not read musical scores I do play the piano by ear, and have been known to stum a guitar.
Good food well presented and country house and coastal garden and interior design are all my bag particularly when shared with authentic folk.
I have not outlived fast cars and enjoy driving as a natural extension to myself - I simply love exploring - prefereably when I am at the wheel - ideally on land, sometimes in the air and historically by boat - large ships and small nifty power boats.
I am an omnivore, try to be as 'organic' as possible but do not eat junk food. I enjoy creative cooking indoor or on an open fire. Fungi hunt and wild forage too. Generally I am fortuneate in that my diet is fairly well open - There was a time when I was very limited to a non diary low residue and at times high residue - right through to only eating 'space food' ie pre-pared deep line stuff fed through a drip, which one never tasted - I tell you it is not fun having no food that one can masticate for 6 month runs! I am particularly pleased to have overcome the need for all my alimimentary tract to be compromised: I do so love, and appreciate, flavour and flavour combinations! If you are are experiencing difficulties in this area, even if you would not otherwise do so, DO be creative in how you prepare and present food - including 'just' for oneself - it can make all the difference in just eating one and a half mouthfuls - rather than dimissing the whole thing as beyond a current tolerance. Be kind to yourself - but be proactive and take responsibility too!
Sometimes presentation - and change - is nine tenths of the game - we can overcome our mind - and our ego by recruiting our eyes and our senses!
I am unable to sustain fast walking far - over an extended time - but do lead an active life in a 'measured manner' - Meaning my energy levels are generally good so long as I maintain focus - commensurate with an active but not over active active 60 year old: But my mind is more akin to a thirties onward-something: Time is but a human construct after all. AND THERE IS ALWAYS A WAY AROUND A SHORTCOMING. So on good days I can match any human being - but am unable to sustain such an endeavour! Also my thirst for driving and adventure overcomes most things and is an expanding and rewarding necessity for me!
I have to admit I like fast cars too - both classic and modern.
Flying too is an under-explored passion.
Also, I would never to choose to live without dogs - White boxers: They are creatures unto themselves and great fun .... but be warned, they are the adolescents of the K9 world, loving, energetic and people orientated: And most of them are trainable - just independent souls too!
I am slowly learning that expectation is best not overly developed and gratitude a most rewarding transistion!
Realism too can be productive and authentic where honesty prevails.
I think this will give a lead-in to me: Probably written too much .... but hey - Wishing you a good Journey along the path of life.
If you have an active mind, kind heart, and are not afraid of being truly authentic with Others and unto yourself ie you know yourself - or at least have and continue to persue an active course in order to do so, then we may share commonality: I look forward to helping and sharing.
And remember ... Kids come in all ages, shapes and sizes :-)
I will try and remember to log in from time time - Thanks for looking in.
Currently I am not a premium Member and am limited in personal replies - but I will respond to forum posts where I feel I may help in some way.
I believe I may be able to reply to a message sent directly to me by a Member [they show when logged in as emails- and I ialso believe it is possible for folk to read my posts as they are kogged against my Profile - butI am unable to initiate a direct message to a Premium/Member personally.
Thank you to MeetanOstomate.org for this site.
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